A little bit of twitter-inspired philosophical wonderings…

A new endo twitter account appeared a few days ago. The general point of the account is to provide support and some kind of comic relief for endo fighters (I dislike calling us ‘sufferers’ because it kind of implies that the disease controls us, at times it does feel that way but I much prefer the term ‘fighters’). I noticed the account quite early on (being somewhat addicted to twitter) and as I tweet about my life with endo quite a bit, I have been retweeted by the account.

I like the account. I think it is witty and honest and relatable. I don’t agree with every tweet but I think it is a good thing and certainly helps bring endo sisters together because it is so active.

However, I noticed the other day that not everyone is supportive of this new account. I saw a tweet which piqued my curiosity and so I read the conversation surrounding it.

One endo fighter took an aggressive tone when she asked the girl who owns the account to leave her alone. She claimed the account was stupid, there was nothing at all humorous about endo and it was flippantly making light of her pain. The conversation continued with more and more bitter comments from her side. To her credit, the girl who runs the account responded very maturely and diplomatically to what was essentially, verbal assault.

This little, seemingly insignificant, exchange made me think about how people can react to something as life-changing as a chronic illness.

There are always going to be people who are naturally optimistic and upbeat, who keep going no matter what and as Eric Idle would say ‘always look on the bright side of life’. (do do do do do do do do) Likewise, there are going to be people who think their world has ended and fail to even look for the light at the end of the tunnel. Most of us will oscillate between the two extremes during our own individual journeys. The thing is, to keep travelling.

Since I got really ill three and a half years ago I have experienced my fair share of ways to cope with it. When I first collapsed and in the weeks following, sheer panic occupied my every waking minute. My body was being attacked from the inside and I didn’t understand why. I wasn’t having periods yet I was experiencing the worst kind of period pain x 100. I knew I had endo and it had been removed a year earlier, why was the pain back?

Slowly, I adjusted to my new kind of life. I had to wear skirts instead of jeans (something which was entirely alien to me), tasks I could have done in a day all of a sudden took me at least three or four and my gorgeous, bass playing boyfriend broke up with the new me. I resigned myself to waiting. I was waiting to see someone, waiting for them to tell me it was the endo again and waiting for them to take it away like they had before. After months of waiting, I was told it wasn’t endo.

I felt lost and confused. It felt exactly the same as it had done before, only worse. My GP, convinced I had Irritable Bowel Syndrome, put me on stupid treatments to make me go to the toilet more. This I remember as the Embarrassing Stage. Documenting everything I ate, every time I went to the loo, describing everything that happened there. I was only 20 and I had a colonoscopy. Shockingly to the doctors, but not to me, there was nothing wrong with the inside of my bowel.

Frustration set in as time and time again I was put on stupid treatments that never made any impact on my level of pain. Eventually, I talked one consultant (after he insulted me and suggested I lose weight) into giving me a MRI. The scan showed a multitude of cysts covering my ovaries. The right one was practically hidden under the sheer volume, 13 that they could count. This led to a referral to gynae for poly-cystic ovarian syndrome. They then decided to put me through an artificial menopause. This was the Nothing-Can-Be-Worse-Than-This-Hell stage when I hated everything and everyone, especially me. This was a low period as my body rejected the treatment and I ended up spending the Easter holidays in a hospital bed.

What emerged though was the new me. I began to accept that the magical solution I’d been holding on for might never come. Instead of wasting this period of my life waiting for things to get better, I should make things better for myself now. I began to fight. I fought the doctors and insisted on recognition. I stopped being embarrassed by my body and learned to love all of me, right down to the burns left by my ever-present hot water bottle. I realised that being ill and living with chronic pain has actually made me into a better person than I once was. I have more patience, more sensitivity and found a strength I never knew I had.

Things haven’t been easy. In November last year when my consultant changed his mind about my condition, I hit a really low point again but I bounced back. And I will keep bouncing back. However many times it takes.

Sometimes, we need a bit of humour and a bit of encouragement. I understand why it can be hard to see the silver lining at times but if you don’t look for it, you’ll never find it.

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I have a friends mom who had a terrible car accident. She started a chronic pain club. I emailed her when she set it up because endometriosis was not on her list of chronic pain diseases. (And to be honest I was a little skeptic, how can you run a chronic pain club when you have only had issues for a few weeks?) At first she constantly asked me to go to their meetings. At the time I didn’t because #1 my pain was minimal and #2 she is the most negative person I have ever met. I haven’t seen her in years but I used to know her really well. Her car crash now defines who she is. I would guess that everyone at that club lets what they have define who they are.

Finding a balance and bouncing back is all we can do. You are inspiring :-)! There are negative people all over the world. With or without endo they have negative energy. It is very refreshing to read your blog. Refreshing to see someone who is able to push through all the BS and carry on as best you can. Keep fighting :-).

Thank you so much for reading and your thoughtful comment.
I know people exactly like that, who let something beyond their control define the person they become. I just couldn’t be like that. Denying you are actually ill, which is something I’ve tried, isn’t healthy either. You are totally right about finding a balance. We may have endo but we are so much more than that!
Fighting is all that we can do. Thank you again for stopping by 🙂